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Patients contact
A patients union is run for and by patients. This means that people share knowledge and experiences. Especially with a worldwide organisation like ours, the problem is to make and maintain contacts. The General Members Meeting is an excellent way to make contacts with other patients. Unfortunately not all members are capable of joining this meeting. This is especially true for our foreign members from for example the United States.
How do we keep in touch with our foreign members? Practically all foreign members find us through the Internet. Therefor we communicate mostly by e-mail. This medium is not very 'interactive', in other words you can't communicate directly with each other, like you would on the phone. In addition to that e-mail is relatively insecure. We also discourage using 'newsgroups' because of the lack of 'privacy'.
In the Netherlands we organise yearly a day for the patient en his/her family such as 'The Efteling'.
A patients union is run for and by patients. This means that people share knowledge and experiences. Especially with a worldwide organisation like ours, the problem is to make and maintain contacts. The General Members Meeting is an excellent way to make contacts with other patients. Unfortunately not all members are capable of joining this meeting. This is especially true for our foreign members from for example the United States.
How do we keep in touch with our foreign members? Practically all foreign members find us through the Internet. Therefor we communicate mostly by e-mail. This medium is not very 'interactive', in other words you can't communicate directly with each other, like you would on the phone. In addition to that e-mail is relatively insecure. We also discourage using 'newsgroups' because of the lack of 'privacy'.
In the Netherlands we organise yearly a day for the patient en his/her family such as 'The Efteling'.
Activities
Video impression of our activities
To give an impression of the many activities we are involved in. With special thanks to Mark Knopfler for giving permission to use his music!
>> Play video
>> Play video
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Overview of previous Patient Days
* Patient Day 2011: De Efteling (amusement park)
* Patient Day 2010: Avifauna (bird park)
* Patient Day 2009: De Efteling (amusement park)
* Patient Day 2011: De Efteling (amusement park)
* Patient Day 2010: Avifauna (bird park)
* Patient Day 2009: De Efteling (amusement park)